International Awareness Days

AWARENESS RAISING

All IF’s activities are rooted in the principles of the UNCRPD and our mission to advance and protect the rights of individuals with SBH. In 2021, IF continued to raise awareness of the rights of individuals with SBH and the UNCRPD among policy makers, relevant stakeholders, and international organisations.

INTERNATIONAL AWARENESS DAYS

During 2021, IF held awareness campaigns for thirteen international awareness events: the World Folic Acid Awareness Week; World Birth Defects Day; World Health Day; IF’s Siblings Day; International Youth Day; World Spina Bifida and Hydrocephalus Day; International Day for Older Persons; World Mental Health Day; European Day of Persons with Disabilities; the International Women’s Day, the International Day of Families, the World Toilet Day and the International Human Rights Day.

For eight of these international awareness events IF developed social media toolkits to support members and partners in their advocacy efforts.

These toolkits were developed for: Activities included contributions to consultations, publications of statements and meetings and public awareness campaigns in IF member countries, the EU or worldwide. In particular, the focus was on the priorities indicated by IF members for themes such as mental health and ageing.

World Folic Acid Awareness Week World Birth Defects Day IF’s Siblings Day International Youth Day International Day of Older Persons World Mental Health Day World Spina Bifida and Hydrocephalus Day (see also page 42) International Day of Persons with Disabilities

World Folic Acid Awareness Week

During the week of January 9 to 15 2021, IF celebrated the World Folic Acid Awareness Week (WFAAW). This is an annually recurring week in IF’s calendar to focus on additional awareness activities for folic acid and prevention all over the world. 2021 was a special year, marking not only the 5th anniversary of WFAAW, but it also marks the 30 years since the Lancet published an important study highlighting the key role of folic acid in the risk reduction of neural tube defects.

This year’s WFAAW event was a great success with the engagement of IF’s members, partners, active stakeholders in prevention and individuals from all over the world. Just to highlight the level of engagement, the reach of the campaign activity on Facebook saw an amazing increase of 32,106% on the previous 28 days, and on Twitter the number of daily impressions increased from 350 per day up to 5,186 during the week of the campaign.

Whilst the many unprecedented challenges that we all faced over the past year may have restricted many of the usual ‘face-to face’ activities and events that we would normally see from IF’s members throughout the week, the activity online was greater than IF has ever experienced before, with so many members liking, sharing and commenting on IF’s daily posts, and even with social distancing restrictions in place, some members still managed to engage in some face-toface activities.

IF would like to thank all of the partners and in particular IF’s members for being so active in making the WFAAW21 event an online success together.

World Birth Defects Day

On the occasion of the World Birth Defect Day, IF took part and supported this global movement and day by sharing a social media toolkit to raise awareness of birth defects, including spina bifida and hydrocephalus. Raising awareness is indispensable for spina bifida and hydrocephalus.

This initiative aims at “using our collective voice in raising awareness for all birth defects and improving care and treatment” as it is reported that more than 8 million babies worldwide are born with a birth defect each year.

International Siblings Day

IF organised the first IF's Siblings Day on April 10th. During this day IF honoured siblings with SBH because siblings provide unconditional love and support throughout life: “De mi hermana con espina bífida aprendí que su fuerza de voluntad es mucho más grande que sus limitaciones físicas” (EN: From my sister with spina bifida I learned that her determination is much greater than her physical limitations) (Maria del Rosario Nacim, Argentina). Members around the world shared testimonial stories and lovely images with their siblings. The social media posts showed the strong connections of siblings, including growing up together, complementing each other, supporting and accompanying each other at every moment, teaching each other the different ways of doing the same thing, but on different paths, and always reaching the “arrival” line, perhaps even overcoming thousands of barriers, obstacles or adversities, never giving up, putting all our efforts to achieve it, no matter what it takes.

International Women's Day

Maternal health and empowering women with SBH is of crucial importance for IF. IF does this also through several partnerships. As such, IF is an advisor to the UN Women and project holder of the unique Smarter Futures partnership. Together with the members of the IF international working group on sexual health, IF furthermore facilitates meaningful discussions between women with spina bifida and hydrocephalus through focus group discussions on topics such as equality, motherhood, and sexuality.

On March 10th, IF celebrated the International Women’s Day to recognise the contribution of women and girls around the world, who are leading the charge on climate change adaptation, mitigation, and response, to build a more sustainable future for all. During an online webinar, women around the world shared their stories which inspired others.

“Never give up and always believe in yourself. Because you can find a way to overcome challenges and won't be afraid to ask for help and support. Be the power that can move the world.”

Anđela Radovanović (Montenegro) “You have to make big things, it’s important to have a purpose in this world and you have to do it. The only barrier is your mind and you think about yourself.”

Ana Sofía Batres Morales (Guatemala) “Keep fighting for your dreams, don’t give up on your education. We need to have people in different areas to fight for our rights. Everything is possible if you want to do it.”

Vivian Lucía Rivera Marroquín (Guatemala)

International Youth Day

On 12th of August, IF celebrated the International Youth Day together with its worldwide members and especially with the youth group. This day, designated by the United Nations, is a day of awareness and its goal is to bring attention to a specific set of cultural and legal issues that affect young people.

On this occasion, the IF international youth group chose to address the topical subject of the year: the COVID-19 pandemic! Members of the group shared letters on IF social media channels in which they addressed the many challenges they faced during this tough period.

Through sharing these letters, the youth aimed at a triple objective of raising awareness of the pandemic through the eyes of the youth with SBH, connecting with other youth with SBH around the world to let them know they are not alone and to strengthen the sense of community and solidarity.

World Mental Health Day

On October 10th, IF celebrated the World Mental Health Day to raise awareness on mental illnesses. Supported by WHO, on this international day the world takes the opportunity for global mental health education, to raise awareness for and to advocate against social stigma. This is also an important topic for IF. Both the working group on Ageing with SBH and the youth group highlighted the important role of mental health on physical well-being and how mental health affects physical well-being. During this day a social media toolkit was developed and shared with members and partners to provide more information on mental health for persons with SBH.

International Day of Older Persons

On October 1st, IF took the opportunity to raise awareness on ageing with SBH, the barriers older persons with SBH can face, and the need for lifting these barriers. During this day, IF emphasised the importance of integrated care for persons ageing with SBH and the fact that individuals with SBH are subject to “accelerated ageing” which means the ageing process for some some groups of people with disabilities begins earlier than usual, such as for individuals with SBH.

International and European Days of Persons with Disabilities

On the days of 2 to 3 of December 2021, IF joined both the International and European days of persons with disabilities.

On the European Days of Persons with Disabilities (December 2-3), the point of focus was the topics of access to healthcare and digital transformation, especially since the COVID-19 pandemic exacerbated these. Moreover, on this occasion, the IF international youth group and the EDF youth committee e-collaborated to send strong messages about access to healthcare, digital transformation, and children with disabilities. They also highlighted the situation of thousands of young people in Europe such as youth with disabilities who are at greater risk than other groups by calling the European Commission to dedicate the European Day of Persons with Disabilities in 2022 to young people to celebrate the European Year of Youth.

During these days, IF advocated for the rights of persons with disabilities, especially to raise awareness on SBH through a social media campaign and toolkit. SBH is a complex physical condition that touches many aspects of the lives of individuals with SBH, sensitises about disability inclusion and speaks up about their challenges and their need to help the SBH community to go forward and be heard.